Most Terminally Ill Cancer Patients Prefer Disclosure of Their Prognosis
By Roxanne Nelson
Medscape Medical News
April 15, 2010 — Despite the distress of learning that their disease is terminal, most cancer patients prefer to know the truth, and to hear it from their physicians. This conclusion is from a Korean study reported in the April?10 issue of the Journal of Clinical Oncology.
The majority of patients with terminal cancer and their family caregivers preferred disclosure, and patients who were aware of their diagnosis had a lower rate of emotional distress and a higher health-related quality of life, the researchers report.
They found that patients were more likely than their caregivers to prefer to know the truth about their terminal status (78.6% vs 69.6%). The results showed that patients who were told about their prognosis directly, either by a physician or a family member, had a significantly better quality of life, including physical, emotional, and cognitive functioning, than patients who reported guessing about their condition or learning about it by chance.
Patients who were told directly about their terminal status also reported fewer symptoms, such as fatigue, pain, appetite loss, and financial problems.
Right to Know?
"This study highlights the fact that even in cultures such as Korea, which typically have been labeled as cultures practicing nondisclosure, many people prefer disclosure over nondisclosure," said James Hallenbeck, MD, associate chief of staff for extended care in the VA Palo Alto Health Care System in California. "As important as the finding is that a majority preferred disclosure, it is important to note that a significant minority did not want such disclosure."
The implications are that we must individualize how we share bad news.
"The implications are that we must individualize how we share bad news based on patient and family preferences," Dr. Hallenbeck told Medscape Oncology when approached for independent comment. "What is challenging in practice is how best to respect the desire of families to protect patients in such a situation while still affirming the right of the patient to know."
Physicians have an obligation to present information in a manner compatible with patient wishes, he added. "If a patient wants to get all the information his or herself, then yes, that trumps family wishes," he said. "However, I have certainly had cases where a competent patient prefers that only the family be informed, and even that the family make crucial decisions. If this is the desired way of handling things, then that is fine, and my obligation is to comply with such a desire."
The authors note that in some cultures, physicians are not expected to inform patients of a terminal illness and, instead, family members are given decision-making authority and responsibility, even when the patient is fully competent. However, according to previous research, the majority of Korean physicians preferred to disclose a terminal diagnosis to their patient, and nearly all cancer patients and their family members believed that patients should be informed of a terminal illness.
Most Patients Desire Disclosure
In this study, Young Ho Yun, MD, PhD, from the Cancer Management Branch at the National Cancer Center in Gyeonggi-do, Korea, and colleagues collected data from questionnaires.
The questionnaires were administered in face-to-face interviews with patients and family members at the same time, within days of a physician evaluation that the disease had become terminal and that survival was limited to a few months. Patients and family members were followed for 2 months by mail, and family members were interviewed by telephone approximately 3 months after the patient died.
The authors found that caregivers (n?= 380) were significantly more likely than patients (n?= 474) to report that the disease was terminal (83.4% vs 58.0%; P?< .001). Most of the patients reported that their physician had disclosed that their cancer was terminal, and patients were also more likely than caregivers to report that they had "guessed" that the disease was terminal from worsening symptoms (P?<0.05). In addition, 10.7% of patients and 5.4% of caregivers reported learning of the terminal status from a family member, whereas 3.6% and 2.2%, respectively, learned of it "by chance."
Patients were much more likely than their family members to want to know when the illness was terminal (78.6% vs 69.6%; P?= .005). Among those who wanted to know, the proportion of patients who reported actually knowing was 64.0%; among those who did not want to know, the proportion was 39.6% (P?< .001).
Younger patients and those who paid the treatment costs themselves were significantly more likely to want to be told when their illness was terminal. Level of education, job status prior to cancer diagnosis, awareness of their status, and Eastern Cooperative Oncology Group Performance Status (ECOG) score also influenced the patient's desire for disclosure.
The authors point out that approximately 20% of patients and 30% of family caregivers did not want patients to learn the "bad news," and that this percentage is in line with previous findings. It helps explain why physicians often do not provide disclosure, they write.
"In this study, a substantial proportion of the patients who were aware that the disease had reached its terminal stage and the patients who were not aware of it reported wanting to know the prognosis," the authors report.
"The right to autonomy or self-determination is broadly perceived as necessary to human dignity, regardless of culture, and might be applicable to Asian cultures, in which different societal norms influence the process by which decision making is assigned to the patient, family, and healthcare providers," the researchers conclude.
The study was supported by grants from the National Cancer Center (Korea). The authors have disclosed no relevant financial relationships.
